The Specialness of One’s Needs

I know that a while back, at the beginning of the school year, I was all sunshine and rainbows about first grade and how well I thought it would go.

That’s not exactly the case anymore.

Things haven’t been going well. Bowie didn’t react well at first to the teacher and her methods (and truthfully neither did we). He has a hard time completing his in-class work in a timely manner (compared to the other kids), and it’s been a real hot button issue, apparently.

A meeting was requested with the student-teacher coordinator and a school counselor. They have a record of all the SPD stuff from last year, so we just discussed where he was at, how things were going. And they asked us to have him re-evaluated by his OT, to see where he was at with his sensory issues.

I felt kind of ridiculous when they asked how long it had been since he saw an OT and since we had concentrated on his therapy, and I was like, oh, um, gee, well I suppose it’s been a few years. Parenting ball: dropped.

It was unexpectedly really nice to go back to see the OT, even though it meant my kid still has issues. It felt comfortably familiar. I feel safe at the OT. She understands him, she understands us. All his little tics and habits and antics seem normal to her, like no one else in his life. And she’s got answers!

As it turns out, Bowie has developed a bad grip on his pencil. And it’s causing motor-coordination issues. Something that I didn’t even know to look for, I’m not an OT or a teaching professional, so I would never have known it was an issue. I’m a bit surprised it wasn’t brought up before, and I’m actually thankful that the school made us visit her, because that’s the only way we’d ever have known!

Intelligence-wise, he’s right where he needs to be. Even excelling a bit. So, no worries there. As his OT puts it, with his current grip, he’s just getting too tired when he writes, and he needs to stop and rest and take breaks. Something not entirely conducive to keeping up with his peers. So then he gets reprimanded. And his peers see that, and use it as ammo later. And he acts out.

There’s still a major sensory component. And we’ve added small things here and there in the classroom to help him out with that. The good news is that it’s all fixable. The bad news is it’s to the tune of $500 a month for the therapy, which we just don’t have right now. And insurance won’t cover it until we meet our deductible, but the OT only wants to do sessions until winter break, at which time we will have met the deductible, but therapy will be over.

So, yeah.

The best news is that he likes what he’s learning. He likes to read, he likes math, he likes science. And he’s really smart. I know every mom says that, but really, he is. I mean, I’m not talking ‘gifted and talented’ or anything, but he’s got critical thinking skills, and he can extrapolate on ideas, and I’m just really proud. That’s all.

I hesitate to call him “special needs”. Or to treat him that way. Because there are so many kids out there with much more serious special needs than him. But, when you get the “you’re a terrible parent” stare down from a bystander as he throws a sensory fit in the middle of the farmer’s market, then I feel “He’s special needs.” right on the tip of my tongue.

We do our best to support him daily, hourly, by the minute. But we are also human beings. And the name-calling, the fit-throwing, the hitting, the pushing his brother around, it gets to us sometimes. Being back at the OT means being back in the care of someone who knows how to make this right again. Knows what he needs to bring him back to center.

He didn’t turn the corner sensory-wise until after he’d turned 2. Before that, he was a “normal” baby, no issues to report. He was rarely sick, he was developmentally right on, he was happy and social and outgoing.

So, the change was so abrupt for us. But, we took it in stride. This is what he needs right now, we will do this for him.

And then he had another really great year. Kindergarten was a complete dream for us. Finally he’s acting “normal”, he’s having a “normal” school year, everything is “normal” again. To have first grade not only go so poorly, but to have it going so poorly almost immediately, is a big parenting blow to the gut.

As much as I hate the label, he is special needs. He needs special things from us every day. And from all of the other adults and children he interacts with. For his world to feel right, he needs special things. And as much as I hate to admit it, he’s different than other kids. Even so much different from his brother. The way you need to approach Bowie to ask him something or tell him something is different than it is with other kids. It can be pretty exhausting to deal with that every second of every day, but we are here and we are doing it. I can only hope when he’s grown that he can see that we did our very best. And I hope that by then he’s not so “special” anymore.

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3 comments on “The Specialness of One’s Needs”

The best thing you are doing is giving him the skills to learn how to develope his own coping skills for his future. As you know, many in my family have unique needs and the best thing we’ve been able to do is help them help themselves! You are doing a great job!

I was searching mom blogs for a work item and stumbled across yours…your most recent post hit home, as I too have a special needs kiddo in 1st grade. I’ve learned a lot about him, myself and how to navigate school administrators that don’t want to do their jobs. It is exhausting and I can’t tell you how many times I felt like I was the worst parent in the world because my lack of patience got the best of me.
After a divorce, I slowly learned I was his main advocate, his “special” voice. I also had someone enter my life and he taught me to look at my son’s special needs differently. During the initial diagnosis of SPD I didn’t have time to stop and digest it because all I was doing was fighting for my child’s right to learn. I stopped one day while walking down Geary Street during a phone call with my new love, I said to him, “I haven’t even had time to digest that my son has a disorder” and broke into tears. He stopped me and put forth the most amazing perspective, he said, “You have to step back, you have to remove the word disorder from your vocabulary, it’s just a medical term. Look at this diagnosis differently, what your son has is a gift…a special gift. One day his movement seeking ways may lead him to be a great athlete, his sensitivity to sound may allow him to hear things others don’t, his tactile challenges may inspire him to invent something better for kids with his gift.” His words changed my life. They pushed me to find a positive in all the negative.
Special need kids are different, but they have the heart and soul of gold. Thanks for sharing your story, it definitely helps to know I’m not alone.